Decisional Conflict in Home Medical Care in a Family-Oriented Society: Family Members' Perspectives on Surrogate Decision Making from a Multicenter Cohort Study

Objective: To identify factors related to decisional conflict among surrogate decision makers for home medical care (HMC) patients. Design: Prospective Cohort Study. Setting/Subjects: For older patients receiving HMC from four different primary care clinics in Japan from January 2016 to June 2017, we studied the family member with the main potential for surrogate decision making. Measurements: At the baseline, surrogates filled out a baseline questionnaire on their characteristics and decision readiness, while the attending doctors provided information about the patients' characteristics. Patient-and-surrogate pairs were tracked for up to six months after the baseline or for three months in the case of death, hospitalization, or admittance to a nursing home. After this tracking, surrogates filled out a follow-up questionnaire on their decision-making experiences, including decisional conflict. Results: Of the original 159 patient-and-surrogate pairs, 121 (76.1%) responded to the follow-up questionnaire. During the follow-up period, 32 patients (26.4% of the patients followed up) died and 69 (57.0%) experienced decision making. Among surrogates who made decisions, the mean score of decisional conflict was 36.2 (standard deviation 14.7), and 43.5% were above the threshold relating to decision delay. Anticipatory guidance and discussion on the patient's care goals at the beginning of HMC were the two variables significantly associated with less decisional conflict of surrogates. Conclusions: Families felt less conflict with surrogate decision making if they had participated in previous discussions with doctors regarding the patients' care goals. Early-stage anticipatory guidance and discussion are a good opportunity for families to prepare for surrogate decision making.